HHS “Conscience” Rule: What About End-of-Life Pain Care?

The administration, hurrying to cement its social agenda in place
before leaving town, adopted a most meddlesome, dangerous rule at
Health and Human Services.

The proposed "conscience" rule is scheduled to take effect on
January 19, 2009. Congress and President-elect Obama have separate and
distinct options to prevent implementation of this rule.

Under the guise of protecting those with strong religious and moral
convictions from workplace "discrimination," the rule encourages
zealous, sanctimonious healthcare workers to act out their convictions
at the expense of the patients they are supposed to serve.

Most commentary on this rule focuses on impending damage to
reproductive services and access to abortion and contraception. But at Compassion & Choices,
our concerns center on end-of-life care, especially the palliative care
measures that rescue patients from unbearable agony. This ill-conceived
rule will surely obstruct and delay good care in many instances,
increasing the suffering of dying patients and their loved ones.

The pertinent section, 88.4 d 2,
bars health care institutions and employers from requiring "…any
individual to perform or assist in the performance of any part of a
health service program…" if it would offend his or her religious
beliefs or moral convictions. Health care workers cannot be fired or
disciplined for refusing to do their job based on their beliefs.
Absolute job protection extends to physicians, nurses, pharmacists,
respiratory therapists, IV technicians — apparently even cleaning and
maintenance staff.

Compassion & Choices submitted a letter stating its concerns
during the mandatory comment period. The comments went unheeded and the
final rule stands virtually unchanged from the one proposed.

Anyone who works in end-of-life care or health care policy, and
anyone who has cared for a loved one during the final stages of
terminal illness, knows we already have a problem, even without this
rule. Too much pain and suffering goes untreated or under-treated and
too many people die in agony. The Compassion & Choices legal team
has helped raise the standard of care by sponsoring helpful bills and
successfully challenging under-treated pain as a form of elder abuse, but the need for improvement remains great.

Now comes a federal rule encouraging workers to exercise their
idiosyncratic convictions at the expense of patient care. Employees
who, for example, might exalt suffering, or disapprove of discontinuing
feeding tubes or respiratory support have license under this rule to
refuse to deliver or support any treatment or procedure. They can do
this without prior notice or the courtesy of providing substitute
staff. End-of-life suffering often presents as a medical emergency.
Precipitous refusal could leave patients in agonizing pain or gasping
for air while others scramble to fill the refuser’s duties.

Our staff and volunteers deliver information and support to clients
and their families throughout the nation, and we hear many excuses for
under-treating end-of-life symptoms. Some are profound, like doctors
genuinely afraid to prescribe rapidly escalating doses of morphine and
other opioids that are often necessary to stay ahead of pain. They fear
a whistle blower might alert drug enforcement agents, initiating a
federal prosecution. Some excuses are downright silly, like the
determination to keep a dying person from becoming "an addict" in their
last days.

But the most wretched excuse for under-treating pain and other
agonies comes from pious, sanctimonious zealots. I recall one doctor
who told a client’s family not to expect total relief because "we all
have to suffer some" in dying.

This particular conviction finds support in the Ethical and Religious Directives for Catholic Healthcare, (ERDs)
which guide the behavior of every Catholic institution and healthcare
worker. ERD #61 instructs that dying patients whose pain,
breathlessness or other agony cannot be relieved by usual methods
should receive instruction in "the Christian understanding of
redemptive suffering."

Fortunately, presiding bishops and Catholic hospitals enforcing the
ERDs generally lean toward mercy and compassion in their
interpretation. But the existence of this rule threatens that mercy
with a new army of vigilantes authorized to further their patients’
redemption by slowing or withholding the medication that would relieve
their pain. If discovered, such sanctimonious saboteurs could not be
disciplined, fired, or even re-assigned, under this rule.

Most vulnerable is the compassionate end-of-life treatment known
variously as "terminal sedation" "palliative sedation" or "total
sedation." Conditions like bone metastasis or bowel obstruction can
cause pain so virulent it is relieved only by placing the patient in a
coma with strong sedatives and maintaining the coma until death. The authors at HHS apparently had terminal sedation (TS) in their sites in the draft proposal.
They revealed their disapproval when they erroneously referred to it as
"euthanasia," citing a 2007 New England Journal of Medicine report that
17% of physicians object to TS on moral grounds. While the final rule
did not refer to this pre-decisional citation, nothing suggests the
department abandoned TS as a target.

Pious believers stress conscious mental preparedness for death and
are reluctant to cause unconsciousness unless they deem it absolutely
necessary. (See ERD #61) Unaware of this, we were initially surprised
when Christian medical societies and Catholic hospitals fought a
California bill to inform patients about palliative sedation. The Right to Know End-of-Life Options Act (R2K) insures
patients will receive information about this treatment option when they
ask. Right-to-life publications reacted to R2K with contempt and
hysteria. They called this simple information law "nurse assisted
suicide," "euthanasia flirtation" and "suicide promoting."

Such vehement objection suggests right-to-life activists may
sabotage terminal sedation as a treatment option, with job security
guaranteed under the protections of the new rule.

Compassion & Choices has worked for years to raise the standard
of care for end-of-life pain and symptom management. We’ve litigated
under-treatment and sponsored bills to establish a right to pain care
and mandate pain care education as a condition of physician licensure.
It dismays us to know policies, laws and education efforts could fall
victim to healthcare workers encouraged to impose their personal
religious convictions on dying patients in every state.

Revocation of this rule should be high on the Obama administration’s
immediate agenda. If procedural requirements slow the revocation
process, Congress should act immediately to prevent the rule from
taking effect. Decency and mercy demand swift action.

I think this is a great question. I’d worried about PETA and anti-vaccination types withholding treatment under the new “conscience” clause but I hadn’t thought about end-of-life treatment.

My own big question is (and actually has been almost since this foolishness first came up) whether a pro-choice healthcare provider can decide in good conscience not to force a patient seeking pregnancy termination to go through ultrasounds, lectures, waiting periods, and other kinds of obstructive, non-medically-indicated rigmarole imposed by anti-choice activists?

The wingers who cooked up this mess were probably careful to define the regulation as narrowly as possible, and if so then I’m guessing the language would also rule out “conscience” based abuse during end-of-life treatment. But if the definition is broad enough to include withholding anesthesia (hmmm… epidurals?) or, say, vaccinations, then it ought to also be broad enough to protect pro-choice providers as well.

If the rules can’t be repealed outright I’d contribute what I could to support an effort to see whether such “conscience” clauses can be made to cut both ways.

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As far as I’m concerned, failure to provide aggressive pain control at the end of life is abuse. Subjecting someone to unwanted medical procedures is battery. If I were a patient or family member confronted by a sanctimonious zealot, I’d take physical measures to remove that person from my care and call it self-defense.

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Here’s a thought, how far exactly does the conscience rule go? We all know it allows for pharmacies to refuse to carry birth control. It allows for doctors, nurses, even receptionists and minor support staff to refuse to provide services and treatments that they disagree with like abortion. But here’s the question. Does it also allow for doctors and nurses to refuse treatments such as transfusions or treatments involving blood products if their religion (as the Jehova’s witensses) is opposed to the mixing of blood? Discussing pain medication here, can a proponant of natural child birth refuse to provide a woman with an epidural, pain medication during labor, or refuse to assist in an emergency c section based on those beliefs? (I personally have experienced this in the case of my second child when I was refused both an epidural and pain management by a doula who was supposed to be a liason between me and the nursing staff who was there to provide such treatment. I finally received the pain management I desired near the end when I was able to voice my own choices between contractions when a nurse came in at just the right moment. Before that, the doula, who was supposed to be helping me get the treatment I desired met the nurses at the door and turned them away when they tried to bring in the medications.)
Now to take this a step farther. Can healthcare professionals refuse treatment to homosexuals based on their sexual orientation? Can a racist provider limit the services they’re willing to provide to blacks or latinos based on their race? If a nurse can refuse to take part in an abortion procedure, even when the mother’s life is at stake because she believes it’s gods will that this woman and her child die without the woman receiving the care she needs, can not a similarly minded nurse refuse HIV treatment to a homosexual patient (or even one perceived to be homosexual) based on the same idea of god’s will, and god’s punishment for sexual orientation or what is viewed as immoral behavior?